Scleroderma: how Bob Saget defended research on a rare disease that cost the life of his sister Gay

While Bog Saget is remembered by his friends and co-stars, one memory that stands out is his commitment to finding a cure for scleroderma, a rare disease for which Saget was the most prominent advocate.

Saget, 65, died suddenly on January 9, on what would have been the 75th birthday of his late sister, Gay.

Gay died in 1994 at the age of 47.

She suffered from scleroderma, which fueled Saget’s long-running quest to find a cure for the disease, according to Deann Wright, a member of the board of directors of the Scleroderma Research Foundation (SRF), of which Saget was also a member of the board of directors.

“Bob felt that his sister didn’t have a good medical background. It was difficult for her to be diagnosed, which was much more common then, in the 90s, and there were fewer options and there was less understanding,” Wright said. “Hello America.” “It’s been a huge motivation for him to try to raise awareness of the disease and to help advance research and awareness to ensure it doesn’t happen again.”

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In a post shared by the foundation on Jan. 9, before Saget’s death, the “Full House” star wrote about his passion for the cause.

“My heart goes out to everyone who has lost a loved one to this illness,” Saget wrote. “No one should have to suffer like Gay did, which is why I am committed to finding a cure and proud to be a member of the Scleroderma Research Foundation Board of Trustees.”

Wright, chairman of the foundation’s research committee, remembered Saget not just as a famous disease advocate, but as a “rock” who supported every member of the board and staff of the foundation and which gave a voice to people living with scleroderma, an autoimmune disease. disease that causes inflammation of the skin and body.

“We are a very small organization, so individuals can have a huge impact, and Bob was definitely one of those people,” Wright said, adding that Saget’s generosity inspired donors and researchers to join. the cause. “Bob was so generous, and when someone gives so freely of their time, talent, compassion and goodwill, it sets the tone, and others with that inclination are truly willing to join in. ours.”

“As a community with a rare and life-threatening disease, we face many losses and he has always been there for people,” she said. “And he was always ready to lend his shoulder.”

Saget, who was on a comedy tour in Florida when he died, also found a way to bring humor to difficult times and loss, according to Wright, who had known the actor for more than 20 years.

“Bob really had a really deep understanding of how humor could get you through the worst times in your life,” she said. “He was always ready with a different way of looking at things and a different way of using his humor in a very sweet way to help.”

Saget took part in a charity comedy for the Scleroderma Research Foundation more than 30 years ago, even before his sister was diagnosed with the disease, after the foundation’s founder asked her, according to Wright.

After his sister’s death, Saget headlined the Cool Comedy fundraiser, Hot Cuisine, recruiting his famous comedian friends and world-famous chefs to join him. The event has since raised more than $25 million for research, according to Wright.

SEE ALSO: Actors, friends, co-stars react to the death of Bob Saget: “I am broken”. I am disgusted’

“He was in it for the long haul,” Wright said of Saget. “Bob cared so passionately, and he really cared about this cause and just saw it as his legacy, really.”

“We just never thought we were going to lose him so soon,” she said.

What you need to know about scleroderma

Scleroderma has no known cause or cure.

Experts believe the disease — which affects about 300,000 Americans — may be caused by a combination of several factors, including hormonal changes, immune system problems, environmental triggers and genetics, according to Wright.

The inflammation caused by the disease results in patches of hard, tight skin and can affect areas just under the skin, according to the National Institutes of Health.

The most serious type of the disease, systemic sclerosis, can also damage blood vessels and internal organs such as the heart and lungs, according to the NIH.

The type and severity of symptoms vary from person to person.

Although scleroderma can affect people of all ages and backgrounds, it is a disease that primarily affects women. About 80% of people with the disease are women. The disease often begins between the ages of 30 and 50, and it can also affect African Americans more severely, according to the Scleroderma Research Foundation.

The disease is often diagnosed by a combination of a physical exam by a doctor and a blood test.

Symptoms can range from weight loss and joint pain to fatigue, stiff hands and feet, shortness of breath, coughing and sensitivity to cold.

And while there’s no cure yet, research over the past few decades has led to more treatment options for patients with scleroderma.

Treatments now include immune suppression to lessen the effects of the disease and specific medications in more severe cases where organs are affected, according to Wright.

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